CAA is Listening

[Gerwyn]

I am with Teej in areas where CBT is given too much prominence as in the Sparks document. I am not with you when you mischaracterize the research. The Sparks section on CBT was for the most part, correct. The problem was that it dominated the document. I know you can argue with the results/methodology of any one study but the broad array of studies, and there have been quite a few of them, indicate that it can be helpful.

I don't know why that doesn't bother me as much as many of you. I think sympathetic nervous system activation, fight and flight response turned on, and therapies designed to reduce the stress of a very stressful disease SHOULD work. Who is ready to have a disease with no cure stop their life dead in its tracks? I can understand people getting angry with anyone suggesting that CBT is a cure or that is highlighted too much but several people are stating you can't mention it in any context (except that its a harmful therapy) and that just doesn't follow the science.

Honestly that really irks me.. I see studies showing that it can help and then patients emphatically stating that that is not true (and then slamming the CAA over the head for reporting the results of treatment studies!).

Have we gotten to the point where you can't even say it helps some people with their fatigue even after studies suggest it does? That's a pretty darn mild statement. It can't even be an adjunct to a more comprehensive treatment program? Nancy Klimas cannot say it helps patients with symptoms? Is she going to be the next on the CFS hit list after the CAA? Logically she should be. So should Dr. Jason - who has CFS - but who recently did a study showing that behavioral and other stress reduction therapies did improve quality of life - improved their symptoms - but in no way cured.

CBT is here and its going to be here. My guess is that it'll be playing a more and more minor role in the treatment discussion I think the research community is realizing that it has definite limitations. Broad overviews of treatment studies are indicating that. In my overview of the Reno conference I noted that a CBT practitioner got up and said its been overhyped; she did not say it did not have some positive benefits for at least some patients.

I think the CFS community instead of wasting its time arguing that CBT does not help should spend its time arguing that it does not help ENOUGH. That we've spent 10 or 15 years studying it and we know its positive points and its negative points and its time to move on. That's the CAA's stance actually.

CBT needs to be put in the right context; a help that in no way results in a cure. The Sparks document doesn't say it does but it doesn't define its limitations within the overall context of disease severity well enough. That's my problem.

Basically we need more research into treatments that are more effective -that are really effective. That should be the focus, I believe, finding treatments that are really effective. The scientific community is not going to turn its back on CBT no matter how much patients scream. It can, however, modulate its approach and starting looking elsewhere.


Some recent positive studies below



This overview shows it helped relieve fatigue symptoms in 40% of patients.



Grey matter volume



CBT plus a Drug



Adolescents

Cort most of those studies use the oxford criterea chronic fatigue in the absence of neurological signs and includes psychiatric patients The CAA document is not correct. There has never been any benefit in a homogenous population They are mostly from the wesselly school if the CAA dont understand the difference between chronic fatigue and chronic fatigue syndrome then it is a very sorry state of affairs.Of course you can help with the symptoms and functionality in depressed patients and you would expect changes in neural status too.The Oxford criterea are incapable of diagnosing CFS --deliberately so

 

[fingers2022]

Several posters have very eloquently made the case for research as the foundation for changing public and physician perceptions of CFS. This is the Association's strategy (bold is mine):

Haven't read the eloquent posts, which may already have made the point, but I'd modify that to say we need some smart research. Chucking $$$$ at it might work in the long run, but is unlikely to give us the most direct and productive route.

By smart I mean well-designed studies based on knowledge from all stakeholders within the CFS/ME community. Studies with clearly defined objectives and approaches. I mean collaboration between researchers.

OK, dream on, but witness the recent fiasco of WPI - UK (x2) - Holland (Er, somebody is wrong, guys). Witness 5m spent (wasted) on PACE trials in UK. Witness recently proposed study in UK to trial the Lightning Process for kids with ME.

Sure, keep raisng the $$$ (or maybe mostly here), keep chucking it around and see if it lands anywhere useful.

Well, I guess that's a rant, but it's not just about raising the dosh.

 

[Cort]

Cort most of those studies use the oxford criterea chronic fatigue in the absence of neurological signs and includes psychiatric patients

Bliejenburg: All of the patients met the CFS
criteria of the US Centers for Disease Control and Prevention1
and were between 10.0 and 17.2 years of age.

Stubhaug: used 2/3rds Oxford and 1/3 CDC - you have a point there. They did say "The included patients satisfied these ICD–10 criteria, allowing for mild depressive or anxiety symptoms clinically evaluated to be independent of or secondary to fatigue symptoms."

DeLange: The patients conformed to the US Centers for Disease Control and Prevention (CDC) criteria for CFS (Fukuda et al., 1994).


Cleare: We measured diurnal salivary cortisol output between 0800 and 2000 h before and after 15 sessions (or 6 months) of CBT in 41 patients with CDC-defined CFS

 

[justinreilly]

I ask again, how much does it cost to remove these materials from the web? More importantly, does the CAA want to remove these medical educational materials from the web? Is the CAA listening?

I would be so happy if CAA just deleted all this garbage and just put up the Canadian ME/CFS guidelines article. Even a small organization can manage this.

Bonus points to CAA for using the Find/Replace function to replace every mention of 'CFS' with ME/CFIDS on their website. This may take five extra minutes, but if you're paid $178k a year you may have to do some overtime, or delegate someone else to do it.

 

[Cort]

In a recent post you and others have stated that there can be NO mention of CBT and that it has no positive effects at all and that as long as the CAA (or anybody else
presumably) states anything positive about it (no matter how mild, I assume) that you won't support them.

I entirely support you and others that are upset with a document that features CBT in a such a way that it appears to be the only treatment for CFS and I recognize that that kind of document will inevitably, whatever the packet says, lead some physicians to believe this is a pscychological disorder and will impair patients chances for adequate treatment.

When I see studies that do indicate some benefit I can't in all good conscience ignore them. All that means is that there is some benefit for some people. One overview said 40% and bear in mind that the benefit does not always need to be very large for it to be 'significant'. I think that's asking too much.

That's what I think we should focus on; that the benefits of CBT are not substantial enough, that we know what it can and cannot do, and that the research community should move on.

We should ask the CAA to illuminate more treatment areas - which they did with their physician education program they created with Dr. Bateman. I do not believe we should take them to task for mentioning whatever benefits CBT or other behavioral therapies ( and the energy envelope approach is ENTIRELY a behaviorally therapy) can bring. We can ask them to not feature it prominently - for sure.

 

[Stuart]

CAA Pushes Another Piece Of Psychobabble Via Facebook

CBT already discredited in earlier posts. Saying it wasn't is simply revisionist.

Time for fresh signs of CAA continuing to post nonsensical psychobabble - Fresh off of Facebook:

The CFIDS Association of America
For the benefit of newly diagnosed patients posting here, and others, this article by Patricia Fennell, CSW, outlining the four phases of CFS may be helpful. http://www.cfids.org/archives/2000rr/2000-rr2-article03.asp
​

Umm, four phases? What creative pipedream is that? :worried:

Best response post: "Good advice to "newbies"--Read Osler's Web by Hillary Johnson. It is based on facts and is not a lot of psychological stuff like the Phases theory. The "Phases" theory makes me think of stuffing a pacifier in a baby's mouth when it is hungry."

Spring 2000
[FONT=Arial,Helvetica]Understanding the Different Phases of CFS [/FONT]

[FONT=Arial,Helvetica]By Patricia A. Fennell, CSW[/FONT]
[FONT=Arial,Helvetica]Albany Health Management Associates[/FONT]​

[FONT=Arial,Helvetica][SIZE=+0]Chronic fatigue syndrome (CFS) can affect virtually every major system in the body, as neurological, immunological, hormonal, gastrointestinal and musculoskeletal problems have been reported. An estimated 25% of patients with CFS are confined to their homes, while others continue to work at least part time but drastically curtail their social activities.1 [/SIZE][/FONT][SIZE=+0]

[SIZE=+0][FONT=Arial,Helvetica]Given the wide array of symptoms, it is difficult for health care practitioners to fully understand what patients go through on a daily basis. We need to consider social, emotional and family effects as well as the physical symptoms.[/FONT][/SIZE]

[SIZE=+0][FONT=Arial,Helvetica]Individuals coping with CFS progress through four qualitatively distinct phases2 as they learn to better deal with their illness. In fact, how they respond to treatment may be different depending on the phase they are in.[/FONT][/SIZE]

[SIZE=+0][FONT=Arial,Helvetica]Following is an explanation of the The Four Phase Model of chronic illness using a real patient case. [/FONT][/SIZE]
[FONT=Arial,Helvetica]

[/FONT]
[FONT=Arial,Helvetica]Phase I--Trauma/Crisis[/FONT]

[FONT=Arial,Helvetica]Physical. "Kathy" is a married woman in her late thirties with two children. She works part-time at a bank. Although she has never had more than occasional colds, a number of physical symptoms are starting to interfere with her life and work. [/FONT]

[FONT=Arial,Helvetica]Kathy is always tired and her vision seems blurry. Her muscles and joints ache and her throat is often sore. She feels like she has a continual case of the flu.[/FONT]

[FONT=Arial,Helvetica]Kathy is in a coping stage of phase I, where even though she does not feel well most of the time, she is generally able to ignore her symptoms and continue her regular activities. [/FONT]

[FONT=Arial,Helvetica]Eventually her condition deteriorates enough so that she cannot ignore it, and she enters the onset stage. [/FONT]

[FONT=Arial,Helvetica]Kathy's physician examines her and they talk about work and home life. The physician tells her that the symptoms are likely due to stress and recommends that she relax, get more sleep, cut back on work and join an exercise class.[/FONT]

[FONT=Arial,Helvetica]Despite following that advice, her symptoms worsen. Kathy is entering the acute crisis stage.[/FONT]


[FONT=Arial,Helvetica]Psychological. Kathy does not know how to explain her symptoms and has increasingly painful experiences caused by her mood swings and the absence of any useful information about her condition. She worries about what is happening and what other people will think of her. [/FONT]

[FONT=Arial,Helvetica]She is experiencing a range of emotions she has never faced. Due to the lack of recognition and support from the health care community and society at large for the vague and varied symptoms of chronic illness, patients initially conspire with others to deny their symptoms in an effort to remain "normal." [/FONT]

[FONT=Arial,Helvetica]In the acute crisis stage, they realize that their denial will not work and become fearful, ashamed and lonely.[/FONT]

[FONT=Arial,Helvetica]Kathy returns to her physician, who orders extensive tests. Her fears magnify. It is not until almost a year later that she is given a tentative diagnosis of CFS. [/FONT]

[FONT=Arial,Helvetica]Social. Kathy's co-workers, husband and children have noticed the changes. Their responses range from suspicion to support. Some imagine that she is crazy, lazy or just evading work. Others believe her but feel helpless to do anything about it.[/FONT]

[FONT=Arial,Helvetica]During phases I and II, patients are stigmatized and rejected by others, which results in further trauma both to themselves and to their families. How well the individuals deal with the trauma depends on the maturity of the family unit. Kathy's family members learn to censor how much they say about her CFS and to whom.[/FONT]

[FONT=Arial,Helvetica]Case Management. It is often difficult to manage chronically ill patients, given the time and financial restrictions imposed by some health organizations, which preclude lengthy office visits and force a focus on acute symptoms. Practitioners can best help patients in this phase by understanding their sense of urgency, facilitating a diag-nosis and providing support for them and their families. [/FONT]
[FONT=Arial,Helvetica]

[/FONT]
[FONT=Arial,Helvetica]Phase II--Stabilization[/FONT]

[FONT=Arial,Helvetica]Physical. As phase II unfolds, Kathy proceeds from the emergency phase to the plateau phase. Her symptoms assume a familiar cyclic pattern she begins to recognize. [/FONT]

[FONT=Arial,Helvetica]Kathy attempts to create order out of chaos by creating a set of parameters around which she can function. For example, she knows if she climbs stairs in the morning, she will not be able to do so again later in the day. [/FONT]

[FONT=Arial,Helvetica]Psychological. The diagnosis gives Kathy a way to understand and describe her experiences to herself and others. However, as a result of the stigma, she withdraws emotionally from society and becomes more cautious about expressing her physical pain and emotional discomfort. In addition, her physical condition itself interferes with her reaching out socially.[/FONT]

[FONT=Arial,Helvetica]Kathy is also experiencing boundary confusion-she cannot perform the same tasks that she used to, and realizes that despite pressure to return to her old level of activity, she is failing miserably. She feels child-like, not completely confident that her body, brain or emotions will "behave" in any given situation. [/FONT]

[FONT=Arial,Helvetica]She believes that because her medical outcome is uncertain, a cure must be a possibility. She ttempts to find a practitioner who will offer her better treatment and, she hopes, a cure. [/FONT]

[FONT=Arial,Helvetica]Even though there is no cure, this is Kathy's a way of exerting some healthy control over the traumatic changes in her life. Sadly, this behavior erodes the relationship she has established with her primary care physician, who regards her actions as dysfunctional. [/FONT]

[FONT=Arial,Helvetica]Social. Kathy's friends, family and co-workers are also losing patience with her condition and her failure to become "normal" again. [/FONT]

[FONT=Arial,Helvetica]Family members are frustrated both by having to witness her suffering and experiencing social stigma by virtue of being associated with her. This societal "marginalization" of those who associate with the stigmatized can also be experienced by clinicians. [/FONT]

[FONT=Arial,Helvetica]Case Management. During this phase, clinicians need to recognize that patients are attempting to learn more about their illness experience and should help them find ways to adapt to their new range of capabilities. [/FONT]

[FONT=Arial,Helvetica]Patients' support systems are encouraging them to "return to normal," and most will go to great lengths-including trying questionable treatments-to meet that expectation. Without informed clinical guidance, chronically ill individuals can become caught in a repeating cycle of phases I and II.[/FONT]


[FONT=Arial,Helvetica]

[/FONT]
[FONT=Arial,Helvetica]Phase III--Resolution[/FONT]

[FONT=Arial,Helvetica]Physical. True entry into phase III comes when patients finally recognize that they cannot function as they have in the past, and recognize that relapses, if they occur, are part of the normal cycling of chronic syndromes. Kathy enjoys periods of stabilized symptoms, and sometimes even improvement, but still has relapses. [/FONT]

[FONT=Arial,Helvetica]Psychological. Patients in phase III suffer a normal grief reaction when they realize that their lives have changed permanently and that they will never return to the person they once were. They are re-defining themselves and regaining control by letting go of the search for an elusive cure and integrating their illness into their lives. However, they may fall victim to predatory providers of not-so-helpful care at this time or succumb to their own despair and thoughts of suicide.[/FONT]

[FONT=Arial,Helvetica]Kathy is lucky--with the help of her new CFS friends and a social worker, she explores the grief she feels for the loss of her old self. She also begins to deal with her own spiritual questions and locate meaning for her existence and illness. This allows her to navigate the difficult course between necessary grieving and foundering in clinical depression.[/FONT]

[FONT=Arial,Helvetica]Social. Kathy is also going through a tough time at home-she loses a key supporter as her marriage dissolves. She is coping at her job, but knows that depends solely on the understanding of her supervisor. She begins to think about other ways to fulfill her social and vocational needs.[/FONT]

[FONT=Arial,Helvetica]Kathy has also started to speak in public about her CFS, and is sometimes met with negative reactions. She learns to confront stigma and bias, and is surprised at how empowered it makes her feel.[/FONT]

[FONT=Arial,Helvetica]Case Management. The role of the clinician is never more crucial than in phase III. The best way to help patients integrate illness into their lifestyle is to bring a social worker or counselor onto the patient care team. [/FONT]

[FONT=Arial,Helvetica]Clinicians also need to consider their own support network. It is not uncommon for experienced practitioners to feel disbelief and frustration in response to working with chronically ill patients, reactions that can lead to burnout and missed opportunities for effective interventions. [/FONT]


[FONT=Arial,Helvetica]

[/FONT]
[FONT=Arial,Helvetica]Phase IV--Integration[/FONT]

[FONT=Arial,Helvetica]Physical. Phase IV may bring continuous plateau, improved well-being or possible relapse. For the most part, Kathy's symptoms are still stable. [/FONT]

[FONT=Arial,Helvetica]However, this does not mean that life has become easy. Sometimes she is so debilitated she must use a wheelchair, which she hates, and she still becomes mentally confused, especially if she overextends.[/FONT]


[FONT=Arial,Helvetica]Psychological. The real change is that Kathy has created a new "ideal self" and is using it to transcend her illness. In phase IV, patients have achieved an integration of the pre-crisis self with the newly-claimed, respected self who has suffered and endured. Kathy continues to pursue her own emotional and spiritual growth, and only has occasional need for clinical help. [/FONT]

[FONT=Arial,Helvetica]Social. Patients in phase IV develop new friends and sometimes new partners. Hopefully, through intervention, they may also be reintegrated with alienated family members, friends and lovers.[/FONT]

[FONT=Arial,Helvetica]Kathy changes her job and decides to take a position running a web site from home. Her husband has remarried, but she is moving on, and has even submitted part of her journal to a CFS newsletter.[/FONT]

[FONT=Arial,Helvetica]Case Management. Practitioners should keep in mind that most patients do not live in phase IV; the pattern of chronic illness is cyclic and requires ongoing oversight. If a serious blow (physical or psychological) knocks a patient back into phase I, they may turn again to a helpful clinician to speed the process of integrating the experience into their lives. [/FONT]

[FONT=Arial,Helvetica]Dividing the case management responsibility appropriately among members of the health care team (including physicians, physician assistants and social workers) will help ensure that the patient and his/her family stays on track. [/FONT]


[FONT=Arial,Helvetica]References

1. Feiden K. Hope and help for chronic fatigue syndrome. New York: Prentice Hall, 1990.
2. Fennell PA The four progressive stages of the CFS experience: a coping tool for patients. J Chron Fatigue Syndrome. 1995; 1:69-79

Ms. Fennell is director of Albany Health Management Associates, Inc., and senior clinical consultant at the Capital Region Sleep Disorder Center in Albany, N.Y.[/FONT]
[/SIZE]

 

[justinreilly]

AIDS, Alzheimers, MS, asthma, autism, all types of rare diseases, many illnesses have had strong and supportive medical policy due to public pressure, before the scientific evidence was fully developed.



I agree, but the medical community is not the media target here, my point was that media can influence the PUBLIC, and that can turn into new 'political correctness' which can work to the benefit of the media's favorite issues. Don't underrate the subtle psychology in this, the media influences the public who then puts pressure on policy-makers who can force changes in medical policies by law. Yes, in an ideal world strong science would make our case. But we just do not have that yet and I don't think we need to hold ourselves hostage waiting for a super-strong scientific case for CFS. There is more than adequate evidence in the millions of sick people and the existing research base. There is probably better evidence right now for CFS than there is for other illnesses that are far more socially accepted.



Maybe we should ask the SSA for some research funding for CFS, they might actually be the largest financial beneficiary of a treatment that got CFS patients off disability. I would be first in line for that.

The PR leads to more funding which will lead to the eventual cure. I seriously doubt that a cure for CFS will be found unless hundreds of millions of $$ are spent EVERY YEAR for many years in research. That is what is required for this level of illness, based on experience with other conditions. We clearly have a complex neuro-immune disorder as well as some other co-morbid conditions and may need some basic research funded. The technologies to study complex neurological impairments are just barely emerging. Without good PR we might never gain the critical mass needed to solve this, I am a realist, or try to be, and while I would love to see a sudden end to CFS, a silver bullet cure, so far that has not happened so why not build a case for serious funding? IF many episodes of TV dramas are part of changing the public image, then let's get writing! That is probably a much cheaper way to change the public image than a direct advertising campaign. But I would agree with your point that we do not want to rob research funding for PR, yes, new resources are needed, maybe should be recruited, for that type of effort.

Kurt, I agree entirely with all this. If my understanding is correct, we don't really know (much) more about MS than ME, for example and there are rare diseases that are better funded than ME. Dr. Klimas noted that Erectile Dysfunction gets over three times the NIH funding as ME. Publicising facts like that thru PR will help us get a lot more funding.

I disagree in that I think it's ok to spend more on PR in the short term even if we do not get an increase in funding. Proper PR for us would generate many multiples of what we invested in it. This money would be used for research. We may need to have a bit less science now to have science increased 100 fold to its proper government funded amount in a few years (or ASAP).

Talking to SSA- that's a promising idea.

 

[Cort]

Perhaps, as you stated before, since you're not that bad off, having to do a CBT and GET program would be no big deal to you. For people like me, it could be extremely devastating. It already is actually. I've been treated horribly by doctors and by my LTD.

Maybe I'm in la-la land; if so tell me - but my understanding of the 'CBT' courses in the US - I think they call them something differently here - is that they try and have you work within the boundaries of your illness (and slowly enlarge them) and they include relaxation therapies and sleep hygiene. I don't know why that should devastate you; my guess is the worst that would happen with that program is that it wouldn't work.

With regard to GET; again I hope that GET has changed over time. About a year ago when someone was attacking Lloyd for his exercise article; I actually looked that article up...it said increase your activity levels to the point where you have a flare and then back down and try to very slowly increase it without flaring. That was what it said! And yet he was getting slammed left and right for his horrible exercise article. I asked him at a conference what should a bedridden patient do about exercise; he said if they can only turn on one side then do that once a day....and then try and turn on the other side.

Is anyone talking about regaining functioning with exercise? Being able to actually 'exercise' again. I don't think so...and this one of the medical research communities problems - they over emphasize small benefits. Improving symptoms with very slow gradual increases of exercise does not mean one is cured; it does not mean one doesn't have CFS it means one feels a bit better.

 

[flex]

Cort,

I second Gerwyn and being married to a counsellor am aware of the treatment limitations of CBT. I am also aware that it has been bastardised and is being presented as a cure/treatment for ME. That impression is readily given to doctors. The 40% of people you say it helps appear to be idiopathic fatigue patients, basically psychiatric patients who have their "fatigue" caused by non organic disease issues. Since most ME patients would not attend such treatment and are not included in the studies it would appear that CBT only has a 40% "success "rate with depressed people which is laughably low if there are claims that it can help ME patients. The argument seems to have shot itself in the foot.

The PACE trials have now wasted 5 MILLION and no doubt the flawed treatment strategies will be delivered by more bastardised CBT. The standard block of CBT offered by the NHS is six 1 hour sessions. At the end you are declared statistically "treated". Its just an exercise in pretense. No doubt if you ask for more sessions you are "even more mad than first expected". So who would dare not to tick the "treatment helped box" at the end of the course. To present a talk therapy as a treatment for a neuro immune disease is scandalous and deliberately further stigmatises the illness. Presenting common sense in the form of a treatment in order to have ownership over patients is not the kind of treatment most people want. On top of that most of the medical profession will push the "illness belief" BS as a side order or most likely, the main course. The more you disagree the more denial you are in.

It is the CBT nonsense which has evolved into the PACE trials and held up valuable research and development.

People should have access to counsellors if they desire for chronic illness but it should be at their request and not used as a control tool. Counsellors use many other forms of counselling other than CBT. This is the only style that is offered and it is presented as if it has some scientific merit for recovery from chronic disease.

Everyone is free to chose there own style of treatment but it must be done with access to making the best informed decisions.

In my opinion we all use our own thought processes everyday to deal with our illness as we are the only ones who have access to our own physical sensations. Having a paid outsider tell us on a Tuesday what we should do on Sunday at 4 o'clock is pointless. It also assumes that we don't already use these tactics due to our own common sense. I really don't desire someone to tell me to go to bed on time as if I couldn't work that out for myself. As for GET that also evolves from the offensive presumption that we are doing less than we could.

Whatever the limited merits of such treatments are presented to be they have been misused, abused and limited effective research. I say chuck them all in the bin and if any one wants a counsellor for any reason that is their right but it should be kept separate from their medical records and insurance companies where it will only be abused.

 

[Cort]

Stuart, this is the problem. That model doesn't state it has the cure for CFS; it doesn't say that it's pscychological, it simply charts many of the phases that people go through with this wrenching illness - and adjusting to a very different lifestyle - which makes sense to me - but it will probably get blasted....Oh well.

 

[Cort]

We may need to have a bit less science now to have science increased 100 fold to its proper government funded amount in a few years (or ASAP).

Thats a good thought that makes sense but I think that's what the CAA basically did for the last ten years and it didn't work at all; research funding continued to decline. I think they concluded their money was better spent with research.

 

[kurt]

Without a careful analysis of the CBT studies I may be stepping out on a limb a little (would not be the first time), but I suspect that Gerwin and the others are right that there was some selection bias in these studies, maybe just enough to furnish some psych patients who really could gain from CBT. The same happens with GET, if you are careful to design a study using some Lyme patients who appear to have CFS but really do not, those patients can sometimes put Lyme into remission through an exercise program, which creates a false finding for CFS.

There are endless ways studies can produce false findings. But the primary problem I see with CBT (and GET) is the reported experience of so many CFS patients that they are harmful and do not work beyond helping some patients cope better with their illness. Here is an analogy (I know I am 'preaching to the choir' but the analogy is fun, so can't help it :0). Design a study of the use of analgesics in an ER. Note that people coming to the ER with broken bones who take pain-killers tend to feel better than those who do not take pain-killers. You could write that study up to conclude that pain-killers are a good treatment for broken bones. That is the type of message those CBT studies send to doctors. But you could also write that study up to show that pain-killers are helpful coping strategies for people waiting for treatment/healing from bone breaks. That is the message that MUST be undeniably clear in any discussion of CBT or other coping strategies for CFS.

We do have an HPA dysfunction so any therapy that reduces stress hormone levels is likely to help us. That is our equivalent of the pain-killer in the ER analogy. The fact that reducing stress helps us, sometimes a lot, does not mean the therapy is a cure, which I think everyone here, including CAA and Cort, recognizes. The problem is that we do not want to be part of sending the wrong message. So quoting CBT studies that overreach with their conclusions or were poorly designed gives the wrong impression. Everything about CBT and CFS must be very carefully written.

Personally I think it would be better to produce a lengthy brochure for doctors that explains clearly the known biology of CFS, and how impossible CFS is to treat, before telling them about a few coping strategies that can help, tell them the whole truth about CFS, make certain they know that coping strategies are NOT in any way treating the organic causes. Maybe that would make them respect the condition and their CFS patients.

 

[CBS]

Haven't read the eloquent posts, which may already have made the point, but I'd modify that to say we need some smart research. Chucking $$$$ at it might work in the long run, but is unlikely to give us the most direct and productive route.

By smart I mean well-designed studies based on knowledge from all stakeholders within the CFS/ME community. Studies with clearly defined objectives and approaches. I mean collaboration between researchers.

OK, dream on, but witness the recent fiasco of WPI - UK (x2) - Holland (Er, somebody is wrong, guys). Witness 5m spent (wasted) on PACE trials in UK. Witness recently proposed study in UK to trial the Lightning Process for kids with ME.

Sure, keep raisng the $$$ (or maybe mostly here), keep chucking it around and see if it lands anywhere useful.

Well, I guess that's a rant, but it's not just about raising the dosh.

Fingers,

I have to say that if there is one thing that the CAA is doing well on an extremely limited budget, it is a collaborative and coordinated research program. I don't think that it's fair to characterize their program as just "chucking" money around.

I am not a fan of recommending CBT for CFS patients as I think that CBT has been portrayed as a treatment when it isn't and even if it were portrayed as a "coping strategy," it brings with it the inherent (and ironically erroneous) notion of erroneous beliefs. I would strongly urge the CAA to recommend supportive counseling for issues with adjusting to a chronic illness. It is my impression that the CAA is betting limited funds on a biological explanation/break through that will put a lot of this in perspective.

In the mean time, the one study that I would like to see on CBT would assess:

1) whether or not any of the claims of a benefit are any greater than supportive counseling and,
2) whether or not counselors actually adhere to the tenants of CBT when they claim to be providing Cognitive Behavioral Therapy.

I strongly doubt that the tenants of CBT are being strictly adhered to in these studies but at the same time, we're getting tarred with all of the the implications of that label.

As for GET, see my earlier post (# 137). The CAA must stop using the term if what they mean is 'pacing.'

Criticize the use of CBT and GET in their advocacy efforts but to be fair, the CAA is coordinating a good research program on a tight budget (and I do feel that they are not helping themselves with fund raising with the advocacy issues that of so much concern).

 

[valia]

The same happens with GET, if you are careful to design a study using some Lyme patients who appear to have CFS but really do not, those patients can sometimes put Lyme into remission through an exercise program, which creates a false finding for CFS.

I would get banned if said what I would like to say to this ridiculous notion of yours and there isn't an icon suitable, I didn't bother to read the rest

 

[Orla]

I agree with you Cort that part of the problem with CBT is the prominence it is given in treatment/management of ME/CFS. But I don't think this is the only problem. There are problems with CBT for ME/CFS in the real-world which I think may not be overcome until there is biomedical testing and treatment available to patients, and most doctors actualyl know something about ME/CFS. In a situation where testing and treatments are not available to patients, many doctors and medical practitioners will put the responsibility on patients to get well (and UK CBT advocates explicitly state that they want patients to take the responsibility to get better).

"While CBT is frequently prescribed as a coping strategy, it can also improve fatigue and activity levels." (from the toolkit)

There is no evidence that CBT improves activity levels. Note the statement from the British psychological society that I quoted earlier.

"Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT believe CFS is purely a psychological illness." (from the toolkit)

"Educating patients about the role CBT can play in helping them learn to manage activity levels, stress and symptoms may help overcome this reluctance." (from the toolkit)

Patients are quite correct to be concerned. I would not be at all happy if CBT was suggested to me. CBT is for people with mental health and behavioural problems, as I have said before. The doctor should not suggest it unless they think you have mental health and behavioural problem (of course some doctors will not know what CBT is, and will just hear it is useful for ME/CFS and just refer on because they don't know what else to do, but that is hardly reassuring). Also this is an interesting paper which is relevant:

Effect of physician-recommended treatment on mental health practitioners' attributions for chronic fatigue syndrome.

http://www.forums.aboutmecfs.org/sh...ent-on-mental-health-practitioners-attributns

<"CBT practitioners can lead individual patients to understand how their behavior is impacting the illness and set up activity and exercise programs that are therapeutic." > (from the toolkit)

There is no evidence that exercise is therapeutic in ME/CFS. There is evidence (from at least one UK survey) that patients who do exercise "programmes" on their own are better off than doing it under a practitioner (my guess is is that patients are more likely to pace properly on their own, but they can be under pressure to "do better" under a practitioner.)

< Cort wote:

This to my understanding is not true anymore.>

in answer to:

<When you're in a CBT program, , you will be expected to push through your crashes and do more than you really should and you will be expected to do some kind of exercise and to be increasing it as time goes on.>

It is true in some areas, unfortunately.

<"Even people with extremely limited tolerance can be helped to gradually achieve increased strength and conditioning. > (from the toolkit)

Really?? where is the evidence? The evidence is that people cannot just increase just because they want to. A "programme" doesn't alter this fact. Most people are doing all they can, and if anything a bit too much. Obviously if people start to feel better they can start to do more. I don't see any concrete evidence that it is a common phenomenon that people can just increase activity just because they would like to do more, even if their health is not improving overall. (i.e. people can do more because they are getting better, not getting better because they are doing more).

<Cort wrote:

"very slowly increased physical activity" - horrors! This is hardly different from Bruce Campbell's Self Help Course>

I thought Bruce Campell's thing was more Pacing? which is not the same as GET.

Cort wrote:

<Have we gotten to the point where you can't even say it helps some people with their fatigue even after studies suggest it does?>

I have my doubts that CBT does much for any ME/CFS symptoms. From reading studies, criticisms of them, talking to people doing CBT/GET etc. I think that patients doing CBT basically learn how to answer questions the "right" way, and so in questionnaire based data, CBT can look pretty good. Patients have learnt what their practitioner wants to hear, and that if they are "good" patients they will also think this way, and so they deliver.

I feel that if CBT really reduced fatigue (or ME/CFS specific fatigue as opposed to maybe some normal fatigue from stress) wouldn't patients activity levels increase? By CBT logic, if fatigue levels drop, but activity stays about the same, wouldn't that mean that patients who do CBT are actually being trained to engage in abnormal behaviour??? (I am being facetious, but my point is that if fatigue levels really dropped in any meaningful way, surely patients activity would increase? This makes me suspicious that fatigue levels are not dropping significantly even where it might appear so from research that relies on questionnaires alone).

Another problem is is that to many doctors ME/CFS = fatigue. If they see a sentence saying CBT reduces fatigue they will interpret this as CBT will decrease the main, or even only, symptom of ME/CFS.

<Cort wrote:

So should Dr. Jason - who has CFS - but who recently did a study showing that behavioral and other stress reduction therapies did improve quality of life - improved their symptoms - but in no way cured. >

The cured point is very important. The most prominent CBT/GET advocates think they are basically cures and this is how they sell it to the government/state. In Leonard Jason's study it was pacing that came out best. It is important not to lump in Pacing with CBT/GET as if they were ideologically, or practically, in the same basket.

<CBT is here and its going to be here. My guess is that it'll be playing a more and more minor role in the treatment discussion I think the research community is realizing that it has definite limitations>

We don't have to accept something just because it is being rammed down our throats. And who is realising? And is this going to trickle down at all? I think it is overly hopeful to assume anything about CBT at this point, especially if Peter White is still advising/in bed with the CDC. If this XMRV thing pans out you could be saved in the US at least, but if not you could be in more trouble. The CBT crowed are extremely organised and pushy and have basically taken over in the UK. They have become more powerful rather than less in the last few years. They just ignore the biomedical stuff and carry on. Holland is another place where they have taken over.

Orla

 

[Orla]

<Personally I think it would be better to produce a lengthy brochure for doctors that explains clearly the known biology of CFS, and how impossible CFS is to treat, before telling them about a few coping strategies that can help, tell them the whole truth about CFS, make certain they know that coping strategies are NOT in any way treating the organic causes. Maybe that would make them respect the condition and their CFS patients.>

I think this is a good suggestion Kurt.

Orla

 

[justinreilly]

Bliejenburg: All of the patients met the CFS
criteria of the US Centers for Disease Control and Prevention1
and were between 10.0 and 17.2 years of age.

Stubhaug: used 2/3rds Oxford and 1/3 CDC - you have a point there. They did say "The included patients satisfied these ICD–10 criteria, allowing for mild depressive or anxiety symptoms clinically evaluated to be independent of or secondary to fatigue symptoms."

DeLange: The patients conformed to the US Centers for Disease Control and Prevention (CDC) criteria for CFS (Fukuda et al., 1994).


Cleare: We measured diurnal salivary cortisol output between 0800 and 2000 h before and after 15 sessions (or 6 months) of CBT in 41 patients with CDC-defined CFS

re: Cleare, Wessely and Chalder study- they say they used 'CDC-defined CFS'. I could not access the article for free, but with these guys, and this weird wording I assume they used the invalid "Reeves criteria" not Fukuda.

Anyway, the studies you list are from the usual liers and, honestly I have to assume they are up to their usual tricks in some fashion on every study even if we don't have the time to pour over the study or somehow else figure out what it was sneaky that they did. I'll stick with the principle of: Burn me once, shame on you (Wessely), burn me one thousand times, shame on me.

 

[Kati]

Cort,

I second Gerwyn and being married to a counsellor am aware of the treatment limitations of CBT. I am also aware that it has been bastardised and is being presented as a cure/treatment for ME. That impression is readily given to doctors. The 40% of people you say it helps appear to be idiopathic fatigue patients, basically psychiatric patients who have their "fatigue" caused by non organic disease issues. Since most ME patients would not attend such treatment and are not included in the studies it would appear that CBT only has a 40% "success "rate with depressed people which is laughably low if there are claims that it can help ME patients. The argument seems to have shot itself in the foot.

The PACE trials have now wasted 5 MILLION and no doubt the flawed treatment strategies will be delivered by more bastardised CBT. The standard block of CBT offered by the NHS is six 1 hour sessions. At the end you are declared statistically "treated". Its just an exercise in pretense. No doubt if you ask for more sessions you are "even more mad than first expected". So who would dare not to tick the "treatment helped box" at the end of the course. To present a talk therapy as a treatment for a neuro immune disease is scandalous and deliberately further stigmatises the illness. Presenting common sense in the form of a treatment in order to have ownership over patients is not the kind of treatment most people want. On top of that most of the medical profession will push the "illness belief" BS as a side order or most likely, the main course. The more you disagree the more denial you are in.

It is the CBT nonsense which has evolved into the PACE trials and held up valuable research and development.

People should have access to counsellors if they desire for chronic illness but it should be at their request and not used as a control tool. Counsellors use many other forms of counselling other than CBT. This is the only style that is offered and it is presented as if it has some scientific merit for recovery from chronic disease.

Everyone is free to chose there own style of treatment but it must be done with access to making the best informed decisions.

In my opinion we all use our own thought processes everyday to deal with our illness as we are the only ones who have access to our own physical sensations. Having a paid outsider tell us on a Tuesday what we should do on Sunday at 4 o'clock is pointless. It also assumes that we don't already use these tactics due to our own common sense. I really don't desire someone to tell me to go to bed on time as if I couldn't work that out for myself. As for GET that also evolves from the offensive presumption that we are doing less than we could.

Whatever the limited merits of such treatments are presented to be they have been misused, abused and limited effective research. I say chuck them all in the bin and if any one wants a counsellor for any reason that is their right but it should be kept separate from their medical records and insurance companies where it will only be abused.

What Flex said. Good job.

 

[Kati]

CBT as a coping mechanism for CFS patient is viewed as insulting due to the lack of medical and biological research on our disease for more than 30 years. GET as a treatment of CFS will get the same reaction.

It would be prudent for the CAA to walk away from that area and start quoting doctors that are doing biological research.

In the meantime, how are people coping? Through peer information exchange. This forum is one of the best place to come and ask for advice, vent the frustrations a bit and start doing a bit of advocacy.

CAA the 6 research projects you have funded this year are great, I am hoping it will change our lives tomorrow. As for psychological advice, we have had enough thank you very much. I would suggest you direct new patients that seek advice to the different community groups, since the patients themselves seem to be the experts in the context of our disease.

 

[mezombie]

if the CAA dont understand the difference between chronic fatigue and chronic fatigue syndrome then it is a very sorry state of affairs.

I think that's the heart of the problem with the CAA -- they want to represent everyone and anyone who is "chronically fatigued". By doing that, they are supporting "Reeves Disease".